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For Those Who've Had This For 8-10 Years, & Progressing Same Or Worse


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Ok... i've been going on 10 years now. Im 34, this disease has reeked havok in every area of my life. Each year, i have progressed worse, more symptoms, more malfunctions, with increase of being debilitated..... these past 3 years, im still 75-90% bedridden. Im gettin worse, but im coping better.... my doc has been able to find ways to suppress some of the worse suffering, but i still suffer greatly on many many days. Im now only having about 1 decent day a week...... im confined to my bed and house... i push, and make myself do some things daily..... only feeling horrid afterwards, but still pushing.

I guess... i don't even know what i want to ask.... just want to know that there are others out there who have suffered for 8-10 years or more and if you find you have no more 'remissions' but only stay in a debilitated state for 75% or more of the time.......

I guess i keep waking up thinking i'll be okay, or a remission is in sight.... but it isn't.... only getting worse..... I just am at a crossroads in this as to whether, am i going to be like this forever? No matter what i try doesnt help, doesnt improve the debilitating weakness and the myriad of everything else...... im scratching my head.....

are there others out there in my shoes too?

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Since you say that the phenergan doesn't help your nausea, and it is a as needed medication anyway, if I were you, I would take myself off of it. Just making a suggestion. Phenergan would always put me to sleep. I couldn't function at all on that medication!

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This is a pretty sensitive topic as I so understand your question. And understand that you might not even want to have an answer. I have been there, not having one decent day per week, although decent is relative as we keep getting new levels of endurance over the years. For the first 4 or 5 years I kept going downhill so kept chasing doctors as I thought they would be able to fix me.

Then I noticed that they couldn't and I missed too much of our familylife, kids growing up while I hardly took part in their lives. So I decided to give up chasing doctors and found family life was more important, so spended every moment with them, watching movies, playing games (in bed) or just talking. Over the years I slowly got worse.

Then they grew up, needed me less and I thought it was time to see whether science had made progress and was informed by a member of this forum that octreotide had helped her. So it just came together and I started investigating and called my doc to discuss it. It turned out that it did help me, though I'm not totally cured I am doing better and have a better quality of life.

So maybe it could work for you like this. Maybe doctors have found new meds that could help you too. Or maybe they will in the future. Never ever give up hope, put things on a hold when you can't handle it anymore and get them back out when you feel strong enough to do more research. I hope that one day you will find some relief. Meanwhile we are hear to listen and understand.

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Kim~ hi! actually, nothing makes me sleep or knocks me out.... and what is odd, is that i quit taking the phenergan a few mths ago... only will i take it if the nausea is so bad and i need to be somewhere desperate... .otherwise, i found myself shaking (hands, arms, head) more when i took it everyday.... and yes, since it reallly doesnt do much by taking it daily... i just suffer through or take marinol (marijuana pill) which works loads better, but has a couple of side effects that im trying to work with..... thanks so much for your post..... how you tuned into that, knowing phenergan is prob not needed, that was cool

and corina~ im right almost where you describe. I've been doing meditation and spiritual journeying.... dream journals, anything to help me spiritually, mentally...... and to help cope.... and i have come far, but still so far to go. I find, im not doing much research anymore, as you said...... i think im at the point where..... my kids are teens.... my brother and his wife are amazing at helping me raise them, keep them in church, take them to school, activities, etc..... so.... i figured, instead of this guilt game with mysef that i cannot be there physically for my kids right now, that since they are teens and are seeking out their ownselves and needing me less, then if i can let go of the guilt and shame, then i can focus on me..... and allow that to be for a while, even if its for a year or more or longer..... my daughter is showing some slight signs, she's 13, and has shown them since she was about 1.... so now, im trying to learn to cope better, quiet my mind, soul seek, etc..... so that i can help either or both of my children should they succumb to this.......

so yes, i totally can relate and understand exactly what you are saying...... i

its so funny that i dont take notice to some meds on here cuz i dont think they may relate to me..... ive heard about the octreotide on here sooooo much .... and after what, almost 2 years on here, i still hadnt looked it up...... i did about a month ago.... but still im scratching my head as if it would be for me or not..... i know i seem to have a bit of severity difference and myriad of symptoms differences in most..... I need to do a search on here and see if there's been a thread on what folks have used it for and how it helps or doesnt..... we haven't tried a new med in a while cuz the last few we've tried have made me even worse..... oh my :( But my doc treats me as if he and I are a team.... my psychologist as well, who deals with chronic illness patients and works in my docs office...... so, we have a great team.... in the same office i have my own osteopath too for any pain issues that arise.... so im grateful for it... deeply, deeply grateful... cuz ive been through the 8 years in finding someone to help and feeling alone and then finally finding a rare case doc who wants to learn and who believes us and wants to help..... it's just we've tried everything i know on here to relates to me.... and we've tried many other things too.

One thing i will say..... maybe someone can shed light in this area. I find, when im prescribed tramadol, that on the days that i take it in a higher dose (only on the days i take it), i can function for at least 4-6 hours..... days i dont take it... no function at all. It's the only drug that gives me energy and some type of strength in my limbs that i cant explain. But im not too willing to go down this road yet, as even though tramadol is not a controlled substance.... it can be highly addictive and intolerances develop quickly........ i still scratch my head as to why this is the only drug over all these years that can give me function and energy, or at least what i mean, is enough so that i can function for several hours..... yet a true opiate like percocet, lortab, etc... does not have that effect.......

sigh...... thank you both for your responses.....

corina.... can i ask what the oceotride done for you?

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Tennille,

I don't have any personal experience with Tramadol, but looked it up and here is what wikipedia has to say about how the drug works in the body. I wonder if you might need to have some lab work ups for your serotonin and norepinephrine based on this info:

Tramadol is a very weak μ-opioid receptor agonist, induces serotonin release, and inhibits the reuptake of norepinephrine.[3][4] Tramadol is converted to O-desmethyltramadol, a significantly more potent μ-opioid agonist. The opioid agonistic effect of tramadol and its major metabolite(s) is almost exclusively mediated by such μ-opioid receptors. This further distinguishes tramadol from opioids in general (including morphine), which do not possess tramadol's degree of receptor subtype selectivity and which are much stronger opiate-receptor agonists. Similarly, the habituating properties of tramadol (such as they are) are arguably mainly due to μ-opioid agonism with contributions from serotonergic and noradrenergic effects.

Tramadol is used similarly to codeine, to treat moderate to moderately severe pain.[5] Pharmacologically, Tramadol is similar to levorphanol (albeit with much lower μ-agonism), as both agents are also NMDA-antagonists with SNRI activity. Dextropropoxyphene (Darvon) & M1-like molecule tapentadol (Nucynta, a new synthetic atypical opioid made to mimic the agonistic properties of tramadol's metabolite, M1(O-Desmethyltramadol)) also have similar activities. Tramadol is also molecularly similar to venlafaxine (Effexor) and has similar SNRI effects, with antinociceptive effects. It has been suggested that tramadol could be effective for alleviating symptoms of depression, anxiety, and phobias[6] because of its action on the noradrenergic and serotonergic systems, such as its "atypical" opioid activity.[7] However, health professionals have not endorsed its use for these disorders,[8][9] claiming it may be used as a unique treatment (only when other treatments failed), and must be used under the control of a psychiatrist.[10][11]

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katybug~ thank you :) yea.. i had read it many times before... but i still don't understand how it's making me feel 'stronger in the limbs' and that i feel energy (even if it may be mock energy). And it actually suppresses many many symptoms...... but not in a low dose :(

I knew about the drug when it came out and when given pain meds, this is the one i try first since it's non-narcotic and not a controlled substance. I knew this drug had amazing qualities in the psychiatric sense, as in, it's excellent for mood enhancement, in addition to all it offers that i don't understand. I wander if this drug may open up a possible usage for it for chronic fatigue suffers with ME in the future.

weird that i hate codeine...... yet this is similar? hmmm..... didn't realize it played a role in serotonin and noreph..... as i can't tolerate, even in the tiniest of doses of any ssri or snri... and can't tolerate tricyclics except doxepin (but only short term on that one)..... hmmmmm....... my thinking cap is on..... but im looking up this octreocide too...... wandering if it helps in chronic fatigue syndrome/ME sufferers.......

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I can honestly say that Tramadol and Bentyl are the best drugs to date for my POTS symptoms. I have found that taking one at night before bed is usually enough for me and when it starts to seem that it isn't working - I go off it for about 5 days (this is hard to do) and then go back on at that dose. I have not been sucessful with SSRI's or SNRI's and this does seem to keep me more balanced in an emotional state. It is being used off label for those that don't tolerate those other types of drugs. It also does calm down my symapthetic system as it will lower NE release - which mine is too high. I've also found that it lowers my blood pressure and heart rate at the same time. The combination of the two is better then just using one of the two. I also have EDS and a whole lot of pain and it really helps me to be more functional - up and about more and able to exercise a little more. If I didn't take it my pain would overwhelm my ability to sleep - it at least lets my body relax enough to have SOME sleep. Although, I still don't sleep that well.

I have been looking into trying LDN but would have to go off the Tramadol to try it. Not so sure about it. I've been on this for years and have never gotten addicted nor felt the need to up the dose - with the cycling that I do with it. It seems to work. If you have an addictive personality and think you might get addicted - make your mind up that you will not allow it to go there and realize for the amount of time you are off it - you will be hurting more and have more POTS symptoms - but, it will make it re-set your body and the smaller amount will still work.

I've recently added clonidine. It was making me really tired and more dizzy. Yesterday, I tried just 1/8 pill 2 times a day. Believe it or not - that worked better then what I had tried before. That little amount was enough. I'm so super sensitive to meds.

Issie

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Hi,

I'm not sure when you started your gf diet, but that's what turned my health around. I still have

oi/pots but I'm not getting sicker or collecting diagnosises anymore. You may want to consider the wahls diet.

It has more nutrients than most.

Fwiw tho .. Most of my improvements

are from avoiding triggers not curing my me/cfs/oi. That is unless it turns out that I'm providing

my body what it needs to heal via decreased cytokines and nutrition.

I've been sick for 22 years now and didn't start dietary intervention until I'd been totally disabled for 15 1/2 years.

So I have no idea if we can heal ourselves.

Tc .. D

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Tenille,

I'm pretty brain fogged (due to blood sugar problems) so ahving a hard time to find the right words (even in my own language :) ). But it turned out that I had major stomach pooling (didn't actually now that), so the med works on that, it keeps bp up (which I really found amazing!), for some reason it fixed my incontinence problems (big hooray for that!!!) and some more issues but it def did NOT fix my memory problems. I'm not totally cured but my quality of life is def better and I feel so much happier.

If you'd like I can send you an article on how octreotide works in POTS, just pm me your email address (that goes for everyone who's interested of course). I couldn't have thought it would work like this for me, I just thought I needed to try and hoped for the best.

I hope one day you (and everyone on here) will find some med that makes life more bearable.

Sending warm thoughts,

Corina

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Hi Corina!

Not to hijack Tennille's thread :) but I just wanted to ask you a quick question? How did they determine you had stomach pooling? I feel this is becoming a huge issue for me and have no idea how to get tested for it?

Thanks

Bren

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Bren, it's something I found out myself actually. I've always felt very bloated after eating (esp lunch and dinner) while I don't eat that much. And not just felt it, it was quite noticeable (like in being 4 months pregnant). After I started octreotide I found out that that was much less if not gone. I haven't had much autonomic testing, just ttt and some cardiac testing, so I had to find things out by myself with lots of help from this site and forum!!! So I bet you understand why I love DINET so much, it's been a tremendous help to me!!!

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Hilbiligrl, I'm at present still waiting on a diagnosis (any day now! :unsure: ) but just wanted to reach out to you, as I know this feeling so well. It will be 19 years for me this August, and I have the same feelings of is this forever? I haven't had any periods of remission longer than 7 days during this time, so I'm sorry that I haven't anything helpful to give you, but just wanted to let you know that you're not alone *hug*

On the plus side, you look very young in your picture for your age :)

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